Monday Musings: Online Relationships, Legislative Advocacy, and Civil Rights

He saw snow for the first time...

He saw snow for the first time…

We’re back!  LP saw his first snow, we went to Capitol Hill, and now a bunch of only vaguely related thoughts are pinging through the old noggin.

I’ve been cheating on my husband…

Yep.  I’ve been online dating.  Over the past year, I’ve gotten pretty intimate with oh, maybe 150 or so mommies from across the world.  I’ve messaged with them in the middle of the night, we’ve watched our kids go from little baby blobs to cute little people with blossoming personalities.  Many a night has my husband yawned and given up trying to talk to me because I’m busy with “The Ladies”.  Latke always says “The Ladies” with a grand arm sweeping gesture and a sarcastic face.

It is not just mommies.  I’m resisting the urge to name everyone I met, lest I sound like a complete groupie.  Let’s just say, it was awesome.

As the conference got closer, I couldn’t help but wonder, How would things be in person?  Will I be surprised?  Will they be surprised?

I’m happy to report, I have very good taste in people!  Everyone was… so… them.  Sure, there were some in-real-life discoveries, like my dear friend Jenny, who has an adorable snort-laugh when surprised by something funny.  Aside from that, however, I must say that everyone I met was exactly as I imagined.  Personalities really do shine through even on much-maligned social media, if you engage deeply enough.  It was also a reminder that even though we don’t “see” each other online, they are real interactions, with real impact, on real people.  It was truly gratifying to meet so many people who have impacted me so deeply.  Ya’ll know who you are.  

When you put your kid on the interwebs…

I can’t tell you how many people came up to me last week because they recognized LP from his pictures on this blog.  I’ve actually done quite a bit of soul-searching on the topic of putting images of my children on a public blog, but this past week highlighted how the blog has built so many bridges for us, it feels worth it.

My favorite was when I got to meet Patti Saylor, she found me and a friend at lunch and said something like, “I knew when I saw him, it had to be you!”

So, LP, please don’t hate me for writing a public blog about you.  It has been therapy, community, and advocacy all in one, and I really think that it will have a positive impact on your life.  I hope.

Legislative advocacy in action…

I’ve been plenty critical about the National Down Syndrome Society before, but they do the legislative advocacy right.  I was honored to be side by side with so many amazing advocates.  I can’t thank NDSS enough for giving me the opportunity to attend, and I hope it was the first of many.

I might have also met Diane Feinstein.  No biggie.

The conference started off with an event open only to people who actually have Down syndrome.  I loved it!  Nothing about us, without us.  I knew this was a good sign.

The day of the actual legislative advocacy consisted of over 300 advocates running all around Capitol Hill, meeting with members of Congress.  We talked about the ABLE Act, the need for greater research into the link between Down syndrome and Alzheimer’s, and asked people to join the Congressional Down Syndrome Caucus.

This is important stuff, you guys.  Right now, rules around government health care benefits force many people with disabilities to live in poverty, because they are not allowed more than $2,000 to their name.  If you had to pick between a job and essential health care—I’m talking about things like life-sustaining prescription medication, not just a doctor’s visit here and there—what would you do?  I have a personal connection to Alzheimer’s, and recently read that some researchers theorize that Alzheimer’s is acquired Down syndrome.  Woah.  Don’t we think that this is worth some research dollars?  And I bet you didn’t even know that there was a Congressional Down Syndrome Caucus.  Well, there is, and all the cool kids are joining.

Here’s what I wish though…

I think we need an organization devoted solely to legal and civil rights advocacy for people with Down syndrome.  I think NDSS is doing a great job at the legislative piece, but I was struck this weekend by how much they actually manage to get done for what a small organization they are.  Those people are busy!  And the advocacy that they do, they are good at doing.

Now I know that legal, civil rights advocacy for people with Down syndrome does happen.  It happens at the National Down Syndrome Coalition (NDSC).  It happens at the ARC.  It happens at NDSS as well, and many other cross disability organizations.  I can’t help but wonder, however, if we had it all under one roof.

I’m thinking about how the aftermath of Ethan Saylor’s death could have been different.  Still, there has been no accountability for Saylor’s death, and I don’t know if there ever will be.  What about the little boy who was dragged across the floor by his own school principal?  What about Antonio Martinez, who was pepper sprayed and beaten by police for simply not responding fast enough?  I’m not talking about training here, I’m talking about accountability.  Litigation.  Civil rights.  You shouldn’t get to keep your job after you ignore a caretaker’s warnings and use unreasonable force over the cost of a movie ticket.  What if…?

I’m also thinking about the thousands upon thousands of families across this country who have to hire lawyers to get their kids into an inclusive school setting, something that is rightfully theirs.  Well, what happens if you don’t have the money to hire a lawyer?

I’m thinking about people like Jenny Hatch, who had to fight her own parents in court to be recognized as the adult that she is.  There are many, many more people like Hatch who do not happen to have extra support networks to help them fight for their independence.

Legal advocacy is a specialized beast.  I can’t tell you how many times my discussions in Grassroots Advocacy Land boil down to legal questions.  Just this week, my news feeds have been full of discussions about a woman in Georgia (who has Down syndrome) whose already convicted rapist was granted a new trial.  Sex crimes, disability, the court system, and terrible media reporting make for a tangled web.  

I’m thinking, I’m thinking, I’m thinking…

No medical outreach.  No inspirational stories, no research or legislative agenda.  I’m thinking about a group whose sole purpose was to demand what was legally right and just for people with Down syndrome.  Justice.  I know there are parts and pieces out there, but what if it were all in one place, one unified force?  Media outreach.  Referral hotlines.  Legal resources.  Community organizing.

What do you think?



Read about the ABLE Act here, and find out which House and Senate members have agreed to co-sponsor the act.  If yours isn’t on that list, pick up the phone!  The Garden of My Heart has a great blog post that explains the ABLE Act in simple terms.  The ABLE Act isn’t important just for people with Down syndrome.  It is important for all people with disabilities and for our economy as a whole.

Learn about the Congressional Down Syndrome Caucus here.  Urge your elected officials to join!

Go check out the NDSS legislative agenda, find out how you can get involved.

Selfish Advocacy

You know why I care so much about disability as a civil rights issue?  It isn’t just about my son.  I also care about disability rights for an utterly selfish reason.  Me.  Yes, me.  I’m not considered disabled, yet, I live with 100% certainty that I will experience disability in my lifetime.

Disability is just a matter of time.

I don’t want you to read that last line with the theme of Jaws playing in your mind.  Maybe something more along the lines of Dvorak’s New World Symphony.  Disability is a natural certainty of all human existence.  I look around me, and don’t see disability as intrinsically negative, but rather something that shapes and defines our very existence in often beautiful ways.  It is part of the package.  The cycle of life and death is all shaped by difference, whether race, age, gender, sexuality, body type, or disability. That’s a good thing; difference gives our lives depth and meaning.

I might not have been born with a disability, but there will come a day when I join that group.  It could be tomorrow—a car crash could injure my spinal cord and I’ll become a wheelchair user.  It could be next week—I might develop fibromyalgia.  It could be years from now—I’ll have a stroke that will change my brain and its functioning forever.  It could be decades from now, when the simple process of aging requires that I turn in some of my bodily function and cognition before I leave this world for good.  Like I said, it is just a matter of time.

So I ask myself, what will happen to me if suddenly or gradually become disabled?  When I become disabled, it seems likely that people will mourn me.  Mourn, as if my currently able-bodied, neurotypical self is my “true” self, and the rest is some sort of sad decline—a tragedy even.  No, thank you.

I see my future and I don’t like all of it.  I don’t want disability to only indicate some sort of deficit that warrants exclusion. I don’t want to fight for physical space because the world is only made for people who walk.  I don’t want to fight for emotional space because no one will include me in conversation if I can’t keep up at a certain pace.  I don’t want to fight for space because my need to manage pain, support myself, express myself will be deemed too costly by a society that seems more concerned with shallow material wealth and expediency than anything else.

Our society is so afraid of disability but imagine if we could accept it, embrace it, use it. Fellow human beings with disabilities are advocating about these possibilities every day.  Advocates are speaking, and I’m sad that it took me three decades to listen.

My son.  He’s been born into the world with a disability.  Down syndrome, Trisomy 21, 47 chromosomes.  I mourned his diagnosis, but I look back on that time with some honest regret.  I shouldn’t have had to grieve in order to accept my own flesh and blood, and yet, I did.  What would have been, what could have been, what should have been.  Well, he IS.  Period, end of story.  He’s not some sort of consolation prize given to us instead of a child with fewer chromosomes.  There’s no “true” LP floating out in the ether without his “extra” chromosome.  He has all the chromosomes he’s supposed to have.  

You see, my son and I are in the same boat. I wasn’t born with a difference that our society considers a disability, but I’ll have one eventually.  So I’m selfish and a mother.  I care about disability as a civil rights issue because I want both my son and my future self to be accepted and valued with disabilities, not despite.  I don’t want to admit that I mourned my own son for what I thought he wasn’t, without realizing what he was.   I don’t want to wonder if doctors will wake me up to die after a spinal cord injury.  I don’t want anyone to question my ability to be a mother if I’m disabled. I don’t want change of cognition to mean I’m passed over and forgotten, viewed as a shell of my former self.  Bodies and minds change, abilities change, identities change.  

I can’t honestly say that my advocating is only for my son.  I’m selfish.  It is for me, too.

Down Syndrome: Awareness to Acceptance

What is “awareness”? How can awareness be helpful? Can it be harmful? Where can it lead? October is National Down Syndrome Awareness Month. As I’ve watched and participated in various awareness efforts, I wrestle with the concept and all it entails.

Will an awareness month for my child’s genetic condition help create what I really want—a place at the table of a fully inclusive society? Can the “awareness” alone possibly give rise to the monumental shift that our society needs?

Myth Busting and the Power of Imagery

Awareness can teach that Trisomy 21 is not a disease, nor is it a medical issue in and of itself.  Individuals with Down syndrome are not predestined to think or act in specific ways simply as a result of carrying 47 chromosomes. Just like any other human being, how that 47th chromosome manifests in a person’s body is highly individual, can be positive as well as negative, and subject to environmental influence.  Children languish in neglect and flourish with love and attention. Life expectancy changes with medical attention and scientific advances.

In other words: people with Down syndrome are… people. Easy enough to say, but more difficult to unpack when confronted with hurtful or ignorant myths in our mainstream culture.

Awareness efforts tend to confront these negative forces in three main ways: 1) explaining the scientific underpinnings of Trisomy 21 (often involving lists of associated medical conditions), 2) discussing developmental delay (often slanted toward emphasizing the typicality of people with Down syndrome “despite” the existence of some developmental delays) and 3) generalized statements of affirmation and/or positivity regarding Down syndrome.

Taken together, these efforts generally give rise to a positive image of what life with Down syndrome can be like.  On the one hand, this kind of imagery can be helpful.  When my son was diagnosed with Trisomy 21, my lack of any meaningful, let alone positive, image of Down syndrome was very scary for me.  Yet, on the other hand, I worry that awareness efforts that center heavily on such imagery can inadvertently crowd out the basic humanity of the people in an attempt to re-image the syndrome.

Lists of medical risks may only serve to conflate Trisomy 21 and disease, when in fact they are not one in the same.  Emphasizing the developmental milestones that a child might reach close to a typical time frame may only serve to emphasize the milestones that lag behind.

If we are looking to awareness as a form of re-imaging, does it run the risk of compounding the negativity that it seeks to dispel?  I’m not sure we can reasonably expect the general public to do the hard work of separating out the person from the syndrome, particularly if the message our own community sends out mixes the two.

Visibility as Affirmation

Yet, I also see awareness as a form of visibility to be a powerful act of resistance against oppression. While we are thankfully decades removed from routine institutionalization in this country, it is still a practice in other places around the world.  Institutionalization occupies one extreme end of the spectrum: the ultimate in invisibility and powerlessness.

In contrast, an excellent example of visibility as affirmation is the New York City Buddy Walk that ends in Times Square. I have seen picture after picture of people with Down syndrome, smiling proud in public. The act of broadcasting the faces of people with Down syndrome in such a iconic, public space can be powerful and transformative.

I am here. I am worthy. I am loved.

Parents also “share” their children’s pictures on social media in much the same way, as a celebration and affirmation of worth.  Similarly, taking your child with Down syndrome to your older child’s classroom creates an image of Down syndrome for the other children, and that act erodes the insidious belief that a child with Down syndrome has no place in public education, i.e., public life. Imagery begets visibility, visibility begets affirmation.

Dismantling the Gates of Ableism

Ultimately, the goal is to confront the 800-pound gorilla in the room: ableism.  To be clear, ableism is not just some silly word that disability scholars invented to complain and be angry.  Ableism is a real—though often misunderstood (if not entirely ignored)—force that profoundly shapes our society.  To me, any awareness campaign that doesn’t address the root of exclusion—ableism—closes its heart to the call for true acceptance.

Recognizing that ableism is not limited to only those with disabilities brings us in step with other civil rights communities, thus giving us strength. Ableism, at its core, defines all people by their abilities—physical, intellectual, emotional, even social—and seeks to stratify worth based on false judgments.  Unworthy people, by ableist logic, deserve to be deprived of full participation in society.

Women can’t be rational so are better off subservient to men. African Americans can’t follow rules so must be imprisoned. Jews can’t be generous so deserve none in return. People with autism can’t emotionally connect so remain unknowable. LGBT people can’t be moral so do not deserve families. Poor people can’t work hard so are unworthy of compassion. People with physical disabilities can’t be whole so can never be beautiful. People of faith lack logic and open-mindedness so do not deserve to hold opinions. People with intellectual disabilities can’t comprehend, so meaningful inclusion is impossible.

Ableism thus touches us all.  Gay men, rich women, poor white Americans, for example, all experience privilege and exclusion in unique ways.  So too with disability, although perhaps disability is additionally unique to the extent it transcends all of the demographic and socio-economic lines that define these other marginalized groups.  In the end, we are all humanity’s children struggling for passage through the gates of ableism to true acceptance.  Rather than trample each other in the struggle, why not recognize those gates for what they are and dismantle the ableist thinking that creates them?

Knocking at the Gates of Acceptance?

Awareness can get us to the gates of ableism, but with no guarantee of passing into true acceptance.  A quick look at other civil rights movements teaches us that awareness alone does not guarantee equality.  No amount of awareness—or even forced inclusion—can bring about genuine acceptance and equal treatment.  Dismantling those gates requires power.

Why? Awareness need only involve passivity.  One can generate awareness, without any action on the receiving end, as if by packaging a gift (or image, if you will), and leaving it at the doorstep.  We can label it, describe it, and hold it out, but cannot force someone to open the gate, accept the package, and examine its contents. Awareness is a knock at the gate with no guarantees.

I believe that individually, human beings want to accept each other, but the gates are too heavy.  Those gates are heavy with privilege, power, and misinformation that erect barriers between people where none need exist.  The cure and prenatal testing industries are two sides of the same coin; the needs, values, and choices of individual families have been eclipsed by the almighty dollar.  The social services industry keeps itself afloat by relying on a message of deficiency in order to blur the line between needed supports and forced dependence.  Our educational system insists that inclusion is not always possible so offers cheaper, segregated settings rather than creating radical change.

People thus get left outside the gates, and it’s hard to push through.  Awareness alone may amount to no more than a passive, polite knock; we will stand at the gates waiting for crumbs of acceptance but never enjoy the real thing.

The power of love and outrage

What can dismantle those gates?  Love, outrage, and human connection.

They may seem at odds with one another, but I believe that love and outrage can hold hands to create an awesome power that can move through those gates to true acceptance.

I’m outraged that families are pressured to submit to prenatal testing for the sole reason of selective termination.  I’m outraged that my child could be deemed unworthy of an organ transplant because of his diagnosis.  I’m outraged that parents must fight to prevent the routine segregation practiced by so many school districts across the country.  I’m outraged that once included, no meaningful support is given to some children, so that they float amongst but not with their peers.  I’m outraged that adults with Down syndrome cannot obtain meaningful employment at fair wages.  I’m outraged that a child’s abuse and a man’s homicide are blamed on their genetic composition.

Still, I love.  I love as an act of resistance.  I will even love those who hurt me, as fellow human beings, as I walk away from their painful attacks.  I love, to say, yes we are all cherished members of the human family.  I love to create the strong web of human connection that holds us in times of pain, outrage, and exclusion.

October is Down Syndrome Awareness Month.  Let’s celebrate people with Down syndrome as an act of love and affirmation: You count, you are worthy, you are valuable.  Let’s educate with love and compassion to blow away the dark shadows of ignorance. Let’s shout our outrage at anyone who would exclude people with Down syndrome from our human family, through action or inaction.

Light the path of awareness and tear down the gates to acceptance.

Ferdinand Knab - Das Schlossportal

Ferdinand Knab – Das Schlossportal


This is a Down Syndrome Awareness Month blog hop!

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